Community//

SURVIVING TO THRIVING: How One Family Turned Tragedy to Triumph

Scout Bag Founder, Deb Johns, open up about how her son’s battle with lymphoma inspired a community to come together and create a life changing charity for others suffering.

I was raised in a household where if you didn’t do great at one thing, find something you are great at. So there was always this idea that don’t dwell on the things that aren’t going to happen, make plans with the things that you know are possibilities. So when Bo was diagnosed with cancer, he was in fifth grade, he had a normal tonsillectomy, and I was actually out of the country after he had recovered and gone back to school. And they routinely biopsy anything they take out of your bodies these days. And I got a phone call from my husband, we got the phone call from the doctor letting us know that Bo’s tonsil was malignant, and that it was a cancer that doubles in size every 12-hours and that we need to act immediately.

I was on the next flight home. Bo was in the hospital within hours. And the great news for us was that there was an incredible doctor who had studied large B cell lymphoma for seven years and had done a new regimen for that type of cancer in kids, and we were the beneficiaries of that very positive proactive type of treatment. The tough news was that it required Bo to have six rounds of chemo on his spine, and each time he had the chemo in his spine, we had to sign a waiver that basically stated if anything happened, which it could, when they inject it into the spine, any kinds of side effects, paralysis, all of that. There was no choice. We saw our kid who needed help, who had the opportunity to have the best doctors, frankly in the country, helped him get better and we went with it.

The other great thing was that Georgetown Hospital is walkable from our home. We had the incredible, incredible luck to have a support system of neighbors and friends very close by who immediately rallied in two ways. One, they said, “What can we do for Bo?” And two, they said, “What can we do for you and your family?” Because it becomes a family life. And so we were very lucky to have what we call the angels for a day, where 14 women rotated through a two week period, and each day I was told who my angel was. If I needed anything in or out of the hospital, having three kids at home, they would manage and help out with it, which was an incredible level of support when you go through something that isn’t great news to have your friends step up in that way, and the community step up in that way was huge.

We came to realize he really had everything he did need. He had insurance, we had family close by, friends close by, an incredibly supportive school. So we thought, well what can do we do for the kids who are less fortunate who are also in the oncology ward battling their cancers alongside Bo. And we came up with the idea to start a fund that would feed into what was already a small fund called the Family Relief Fund. It never had more than a thousand dollars in it. And it was basically to put a bandaid on something that insurance wouldn’t cover or out of pocket could not cover for families who simply couldn’t afford groceries that month or rent that month. Our friends wrote letters on our behalf to 1200 people, we called it the Go Bo Fund, and 15 years later we’ve raised three quarters of $1 million that has all gone into this fund.

It designated by a social worker who assesses your situation when you’ve been to the hospital. And she will say, what are your challenges? What’s your financial situation? And we’ve been able to help a lot of kids and a lot of families. And while Bo was in the hospital, the very positive thing was I said, “Bo, if you weren’t in here, we wouldn’t be raising this money in the same way. You’re the reason that people are donating, so you got to keep fighting your fight.” And every day he would say, “Mom, did we get more money for the kids?” It was a motivator for him. It was a motivator for us. And it also I think helped people feel like they could talk about it because it’s a very emotional time when a kid gets sick, and if you can give people an opportunity to talk about it in a proactive way, then they feel like they’re part of the solution.

I think what it has really taught us is that there’s nothing more challenging than something you can’t control. And illness is something that, I’m certainly not a doctor or my husband is not a doctor. When you are diagnosed, a child is diagnosed, you are in a situation where your control is not worth anything. What you can do is manage, hold down the situation. And so what we have learned, taking a look at our business where things come up that we don’t anticipate, things change when we least expect it. You have challenges when you’re not prepared for that kind of day. It makes you realize when you have gone through something that is so difficult to put your arms around occurs, that you say to yourself, you know what, we made it through that, comparatively speaking, we can make it through anything.

We can survive anything. When you are faced with something that is seemingly insurmountable—those daily struggles, the daily challenges, there’s always creative ways to think about managing the situation.

If someone comes to you and says, “What can I do?” It’s on you to figure out something that will involve them. But it’s also on the individuals to really be willing, to be a little selfless in how they give and you get so much back. Any kind of input, whether it’s financial or whether it’s with effort, is going to make a difference, particularly to smaller organizations. In everyone there is the ability to give. I just think that sometimes we don’t know where to start. When people just think a little more creatively, pay attention to where they live—a lot of it is right in front of us.

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